Search found 200 matches

by sleepdancer2
Sat Apr 13, 2019 10:32 am
Forum: Physical Treatments
Topic: A home TENS unit that works! Ahhh!
Replies: 4
Views: 236

Re: A home TENS unit that works! Ahhh!

Thanks for the recommendation on the TENS Unit. Mine is getting due to be be replaced. These days I find two of the small electrodes on my lower back/buttocks sufficient, but for the first few years I used 4 of them in a square around my buttocks. Wasn't able to find spots of my legs where I could t...
by sleepdancer2
Sat Apr 13, 2019 10:14 am
Forum: Just Joined?
Topic: Hello to all
Replies: 15
Views: 310

Re: Hello to all

While your doc is checking things might be a good idea to also check your Vitamin D and Magnesium. These things among others are important to muscle and nerve health. Your history of trying just about everything sounds familiar. I am lucky in that I am one who can quiet my legs by using a TENS Unit ...
by sleepdancer2
Sat Apr 13, 2019 10:09 am
Forum: Just Joined?
Topic: Is this RLS? So confused and need help
Replies: 6
Views: 218

Re: Is this RLS? So confused and need help

Your mention of your hubby holding your legs down at night certainly sounds like periodic limb movements. Don't know if the jerks when falling asleep are myoclinc jerks or if as you doze off periodic limb movements kick in. I agree with the previous poster who suggests you have your ferritin level c...
by sleepdancer2
Mon Feb 25, 2019 4:36 pm
Forum: Prescription Medications
Topic: Paradoxical reaction on gabapentin?
Replies: 12
Views: 217

Re: Paradoxical reaction on gabapentin?

Jerky movements are a listed potential side effect of neurontin. I would discuss that with the prescribing doctor yesterday. Also check any other meds you are on for extra movements being a possible side effect. I had extra movements on Sinemet, Mirapex, and Requip. The Sinemet movements looked diff...
by sleepdancer2
Mon Feb 25, 2019 4:15 pm
Forum: Physical Treatments
Topic: Has anyone tried OSKA Pulse?
Replies: 8
Views: 214

Re: Has anyone tried OSKA Pulse?

Ditto on the TENS Unit. It has been my sole source of treatment for my legs for about 7 years now. I would recommend using it consistently before bedtime over a period of time. The effect seemed to me to be a bit cummulative and more effective over time. I use mine as was prescribed for low back pai...
by sleepdancer2
Fri Jan 25, 2019 11:22 am
Forum: Physical Treatments
Topic: Is anyone having a successful 'drug free' experience?
Replies: 12
Views: 517

Re: Is anyone having a successful 'drug free' experience?

After years on dopamine meds (Sinemet, Mirapex, Requip) the side effects and augmentation caused me to go off them. I was surprised to find that much of my severe RLS was actually augmentation and nearly resolved just going off the meds. What remains is tolerable. While my periodic limb movements di...
by sleepdancer2
Tue Jan 01, 2019 4:20 am
Forum: Just Joined?
Topic: introducing myself. very much in crisis
Replies: 7
Views: 328

Re: introducing myself. very much in crisis

I commend you for being open with your family and allowing them to intervene. Usually those with addictions prefer to keep their secrets so as to be able to continue the behavior. I had a simlar side effect on Mirapex. Once I got off the med it resolved. Unfortunately I stopped the med abruptly and ...
by sleepdancer2
Sat Dec 15, 2018 12:39 pm
Forum: Prescription Medications
Topic: Need some advice
Replies: 10
Views: 222

Re: Need some advice

I have used both of the dopamine agonists you mentioned. They helped at first but it didn't last, and at higher doses I had side effects and augmentation. Before your doctor prescribed these meds did they order bloodwork? The test we hear the most about is a ferritin level. Those with RLS are recomm...
by sleepdancer2
Mon Dec 03, 2018 6:32 am
Forum: Physical Treatments
Topic: Any luck with a sleep study?
Replies: 20
Views: 841

Re: Any luck with a sleep study?

... I actually through my knee out, I assume from PLMS.... My doctor says RLS and PLMS are different diseases, but I don't buy that. I think one is just an extension of the other. I figure if I go to a sleep clinic, the distraction will either help or I will just be up all night. I've been told I s...
by sleepdancer2
Sat Dec 01, 2018 3:13 pm
Forum: Physical Treatments
Topic: Any luck with a sleep study?
Replies: 20
Views: 841

Re: Any luck with a sleep study?

A sleep study can give the doctors justification for treatment. It can also let one know how severely their sleep is affected, and having that information can help with making treatment decisions. For mild movements with few arousals or sleep stage disruption, the risk of some of the meds may be gre...
by sleepdancer2
Mon Nov 12, 2018 1:26 am
Forum: General Topics: RLS/WED
Topic: Characteristics of PLMD/PLMs
Replies: 10
Views: 299

Re: Characteristics of PLMD/PLMs

Deb, all the standard descriptions of the movements go out the window when medication side effect or augmentation come into play. If you've seen my sleep video, my movements during augmentation look nothing like expected. I was accused of faking it because my movements did not fit "normal"...
by sleepdancer2
Fri Nov 09, 2018 6:37 am
Forum: General Topics: RLS/WED
Topic: Characteristics of PLMD/PLMs
Replies: 10
Views: 299

Re: Characteristics of PLMD/PLMs

For movements to be classified as a disorder (the D in PLMD) they have to meet a threshold of activity. Short of meeting that level, one can still have periodic limb movements. Doctors differ a bit on calling all limb movements that reach the threshold PLMD. Some do not classify them as PLMD if they...
by sleepdancer2
Fri Oct 12, 2018 2:13 am
Forum: General Topics: RLS/WED
Topic: Social Security - US
Replies: 36
Views: 2287

Re: Social Security - US

I filed for disability at age 53. Took me 3 years and was turned down iniitally and on appeal. Had to take it to a hearing with attorney representation. My attorney said it goes easier for those already at least 55, although I know someone else who had the same trouble getting approved and she is 58...
by sleepdancer2
Fri Oct 05, 2018 3:43 am
Forum: General Topics: RLS/WED
Topic: RLS Patient Symposium
Replies: 20
Views: 799

Re: RLS Patient Symposium

Thank you to all who have reported back. That whole day I felt restless (no pun intended lol) and regretful that I did not summon the energy to make it happen for myself. Would have loved to meet those who attended. This forum has been my only source of solace with those who truly understand what I'...
by sleepdancer2
Fri Sep 07, 2018 6:48 am
Forum: General Topics: RLS/WED
Topic: RLS Foundation hosting a Patient Symposium
Replies: 32
Views: 2086

Re: RLS Foundation hosting a Patient Symposium

@ViewsAskew Do you live in LA now? I hear you about it being hard to plan. @Rustsmith I think I would thoroughly enjoy this meeting. The interactions you describe appeal to me a lot. I have always wished more doctors could know a couple things about my journey, as it could possibly help someone some...

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